Confessions of a non-compliant patient

A famous comedian once said, "I've been rich, and I've been poor, and
believe me, rich is better." Well, I've been a good patient, and I've
been a bad patient, and believe me, being a good patient helps to get
you out of the hospital, but being a bad patient helps to get you back
to real life.

Being a patient was the most devastating experience of
my life. At a time when I was already fragile, already vulnerable, being
labeled and treated only confirmed to me that I was worthless. It was
clear that my thoughts , feelings, and opinions counted for little. I
was presumed not to be able to take care of myself, not to be able to
make decisions in my own best interest, and to need mental health
professionals to run my life for me. For this total disregard of my
wishes and feelings, I was expected to be appreciative and grateful. In
fact, anything less was tacked as a further symptom of my illness, as
one more indication that I truly needed more of the same.

I tried hard to be a good patient. I saw what happened to bad
patients: they were the ones in the seclusion rooms, the ones who got
sent to the worst wards, the ones who had been in the hospital for
years, or who had come back again and again. I was determined not to be
like them. So I gritted my teeth and told the staff what they wanted to
hear. I told them I appreciated their help. I told them I was glad to be
in the safe environment of the hospital. I said that I knew I was sick,
and that I wanted to get better. In short, I lied. I didn't cry and
scream and tell them that I hated them and their hospital and their
drugs and their diagnoses, even though that was what I was really
feeling. I'd learned where that kind of thing got me - that's how I
ended up in the state hospital in the first place. I'd been a bad
patient, and this was where it had gotten me. My diagnosis was chronic
schizophrenia, my prognosis was that I'd spend my life going in and out
of hospitals.

I'd been so outraged during my first few hospitalizations, in the
psychiatric ward of a large general hospital, and in a couple of
supposedly prestigious private psychiatric hospitals. I hated the
regimentation, the requirement that I take drugs that slowed my body and
my mind, the lack of fresh air and exercise, the way we were followed
everywhere. So I complained, I protested, I even tried running away. And
where had it gotten me? Behind the thick walls and barred windows and
locked doors of a "hospital" that was far more of a prison that the ones
I'd been trying to escape from. The implicit message was clear: this was
what happened to bad patients.

I learned to hide my feelings, especially negative ones. The very
first day in the state hospital, I received a valuable piece of advice.
Feeling frightened, abandoned, and alone, I started to cry in the day
room. Another patient came and sat beside me, leaned over and whispered,
"Don't do that. They'll think you're depressed." So I learned to cry
only at night, in my bed, under the covers without making a sound.

My only aim during my two-month stay in the state hospital (probably
the longest two months of my life) was to get out. If that meant being a
good patient, if that meant playing the game, telling them what they
wanted to hear, then so be it. At the same time, I was consumed with the
clear conviction that there was something fundamentally wrong here. Who
were these people that had taken such total control of our lives? Why
were they the experts on what we should do, how we should live? Why was
the ugliness, and even the brutality, of what was happening to us
overlooked and ignored? Why had the world turned its back on us?

So I became a good patient outwardly, while inside I nurtured a
secret rebellion that was no less real for being hidden. I used to
imagine a future in which an army of former patients marched on the
hospital, emptied it of patients and staff, and then burned all the
buildings to the ground. In my fantasy, we joined hands and danced
around this bonfire of oppression. You see, in my heart I was already a
very, very bad patient!

One of the things I had already discovered in my journey through
various hospitals, which culminated in my involuntary commitment to the
state hospital, is that psychiatric drugs didn't help me. Every drug I
was given made me feel worse, not better. They made me fat, lethargic,
unable to think or to remember. When I could, I refused drugs. Before I
got committed, I used to hide the pills in my cheek, and spit them out
when I was alone. In the state hospital, I didn't dare to try this
trick. I dutifully swallowed the pills, hating the way they made me
feel, knowing that, once I was free, I would stop taking them. Once
again, I was non-compliant in thought before I could be non-compliant in
deed.

Now I want to make one thing very clear here. I am not advocating
that no one should take psychiatric drugs. What I am saying, and I want
to make sure this point is understood, is that each individual needs to
discover for himself or herself whether or not the drugs are part of the
solution, or part of the problem. Many people I know and respect tell me
that they would not be where they are in their recovery were it not for
the particular drugs that they have found work for them. On the other
hand, many others, of which I am one, have found that only when we clear
ourselves of all psychiatric drugs do we begin to find the road to
recovery. We need to respect these choices, and to understand that there
is no one single path for all of us.

Psychiatric drugs, like all drugs, have side effects. If the positive
effects outweigh the negative effects, then people will generally choose
to take the drugs. When the negative effects, however, outweigh the
positive ones, then the choice not to take the drugs is a good and
reasonable one. Side effects can be more easily tolerated when one is
gaining something positive in return. Let my give an example from my own
experience. Every day, I take anti-inflammatory drugs to control the
symptoms of arthritis. Without these drugs, I would be in pain much of
the time, and find it difficult to move easily. I'm willing to put up
with the danger of developing ulcers (and I take another drug to help
protect my stomach), because the cost/benefit ratio works out in my
favor. If, on the other had, the anti-inflammatory drug didn't relieve
the arthritis pain, then the cost/benefit ratio would go the other way,
and I would stop taking the drug and discuss with my rheumatologist what
other approach to try.

Here is the key difference between what happens to psychiatric
patients and what happens to people with physical illnesses. With my
rheumatologist, and with my lung doctor (I also have a chronic lung
disease). I am a full partner in my own treatment and recovery. I am
consulted, listened to, and given the information I need to make
informed choices. I acknowledge that the doctors have expertise that I
lack, and they, in turn, acknowledge that I have information about the
workings of my own body that they need to guide them in their
recommendations. Sometimes, we disagree. Then we talk about it.
Sometimes I take their advice, while other times I don't.

Psychiatric patients, on the other hand, are usually assumed not to
know what is best for us, and to need supervision and control. We are
often assumed to be talking in code; only so-called "experts" can figure
out what we really mean. A patient who refuses psychiatric drugs may
have very good reasons - the risk of tardive dyskinesia, for example, or
the experience of too many undesirable negative effects. But
professionals often assume that we are expressing a symbolic rebellion
of some sort when we try to give a straightforward explanation of what
we want, and what we don't want. I'm sure you've all heard the many
psychiatrist jokes that feature the punch line, "Hmm, I wonder what he
means by that?" Well, doctor, I want to tell you, we usually mean just
what we are saying. In the slogan of the women's movement: "What part of
no don't you understand?"

I consider myself a very lucky person. I don't think that I have some
special talent or ability that has enabled me to recover when so many
others seem stuck in eternal patienthood. I believe that recovery is for
everyone. In the words of the mission statement of the National
Empowerment Center, we: carry a message of recovery, empowerment, hope
and healing to people who have been diagnosed with mental illness. We
carry that message with authority because we are a consumer-run
organization and each of us is living a personal journey of recovery and
empowerment. We are convinced that recovery and empowerment are not the
privilege of a few exceptional leaders, but rather are possible for each
person who has been diagnosed with a mental illness. Whether on the back
ward of a state mental institution of working as an executive in
corporation, we want people who are mental health consumers to regain
control over their lives and the resources that affect their lives.

One of the elements that makes recovery possible is the regaining of
one's belief in oneself. Patients are constantly indoctrinated with the
message, explicit or implicit, that we are defective human beings who
shouldn't aim too high. In fact, there are diagnostic labels, including
"grandiosity" and "lack of insight," to remind us that our dreams and
hopes are often seen as barriers to recovery instead of one its vital
components.

Professionals and patients often have very different ideas of what
the word "recovery" means. Recovery, to me, doesn't mean denying my
problems or pretending that they don't exist. I have learned a lot from
people with physical disabilities, who think of recovery not in terms,
necessarily, of restoring lost function, but of finding ways to
compensate or substitute for what one may be unable to do. Some of the
most able people I know, in the true sense of the word, are activists in
the physical disability movement - they may not be able to see, or hear,
or move their limbs, but they have found ways to do the things they want
to do despite these difficulties, and despite those professionals who
advised them not even to try. Without our dreams, without our hopes for
the future, without our aspirations to move ahead, we become truly
"hopeless cases."

I often hear professionals say that, while they support the ideas of
recovery and empowerment in principle, it just won't work for their
clients, who are too sick, too disabled, too unmotivated. Whenever I
hear these objections, I want to know more about what kinds of programs
these professionals work in, and what goes on there. I know that the
professionals who knew me as their patient thought the same things about
me. That's the dilemma of the "good patient." A good patient is one who
is compliant, who does what he or she is told, who doesn't make trouble,
but who also doesn't ever really get better. A "good patient" is often
someone who has given up hope and who has internalized the staff's very
limited vision of his or her potential.

Now, again, I want to make myself clear. I'm not saying that mental
health professionals are evil people who want to hold us all in the grip
of permanent patienthood, and who don't want us to get well. What I'm
saying is that there's something about being a "good patient" that is,
unintentionally, perhaps, incompatible with recovery and empowerment.
When many of us who have become leaders in the consumer/survivor
movement compare notes, we find that one of the factors we usually have
in common is that we were labeled "bad patients." We were
"uncooperative," we were "non-compliant," we were "manipulative," we
"lacked insight." Often, we were the ones who were told we would never
get better. I know I was! But twenty-five years of activism in the
consumer/survivor movement has been the key element in my own process of
recovery.

Let's look at this word "compliance." My dictionary tells me it means
"acquiescent," "submissive," "yielding." Emotionally healthy people are
supposed to be strong and assertive. It's slaves and subjects who must
be compliant. Yet compliance is often a high value in professionals'
assessments of how well we are doing. Being a good patient becomes more
important than getting well. It's like the healthy woman/healthy person
dilemma. Psychological researchers have found that while emotionally
healthy adults, gender unspecified, are supposed to be assertive and
ambitious, emotionally healthy women are supposed to put others' needs
before their own. If you're a woman and fulfill the stereotyped "woman's
role," then you're not an emotionally healthy person. If, on the other
hand, you are strong and assertive, then you can be labeled as not being
an emotionally healthy woman.

Getting better, we were informed by staff, meant following their
visions of our lives, not our own. Let me give you an example, from a
book called Reality Police by Anthony Brandt:

[Brandt says] I was thought to be a hopeful case, for example, so the
doctor assigned to it worked up a life plan for me...I was to stay in
the hospital three months or so to stabilize my life, she said. When I
seemed up to it, I would go to work in the hospital's "sheltered
workshop" where I would make boxes for IBM and be paid on a piecework
basis. When I had made enough boxes I would then be moved to the halfway
house in Kingston, across the Hudson, where they would arrange a job for
me in a special places called Gateway Industries established for the
rehabilitation of mental patients. There I would presumably make more
boxes. Eventually I might move out of the halfway house into my own
apartment.

What Anthony Brandt's doctor didn't know was that Brandt was not a
"mental patient" at all. He was a writer who had feigned the symptoms of
mental illness in order to find our first hand what the life of a mental
patient was like. He had a successful career and a real life that he
could return to. He didn't have to accept limited view of his abilities
as potential. Most real mental patients are not so lucky.

Anthony Brandt wrote his book in the mid '70's, but what happened to
him unfortunately continues to happen today. All those "unmotivated
clients" I keep hearing about are the ones who are on a silent sit-down
strike about others' visions of what their lives should be like. When I
ask professionals what it is that their clients are "unmotivated "
about, it usually turns out to be washing floors or dishes, on the one
hand, or going to meaningless meetings on the other. Would you be
"motivated" to reveal your deepest secrets to a stranger, for example,
someone you have no reason to believe you can trust with this sensitive
information? And, more important, should you be "motivated" to do so?
People, in general, are motivated to do things that they want to do, or
which will get them things which they want. Just because someone has a
diagnosis of "mental illness" doesn't change that fundamental fact of
human nature. All the time and energy that mental health professionals
seem to put into "motivating" their clients to do things they don't want
to do would, I think, be better spent helping clients to figure out what
things they want for themselves, and the strategies to achieve them.

We need to start encouraging people to dream, and to articulate their
own visions of their own futures. We may not achieve all our dreams, but
hoping and wishing are food for the human spirit. We, all of us, need
real goals to aspire to, goals that we determine, aims that are
individual and personal. I feel crushed when I visit programs that are
training their clients for futures as residents of halfway houses and
part-time workers in menial jobs. And if I, a visitor, feel my spirit
being crushed, how do the people trapped in those programs feel?

Researchers have asked clinicians what kinds of housing, for example,
their clients need, and been told that congregate, segregating housing
was the best setting. At the same time, the researchers have asked the
clients directly what kind of housing they want, and been told that
people would choose (if they were given the choice) to live in their own
homes or apartments, alone, or with one other person they had chosen to
live with. At the end of the year, the researchers found, the clients
who got the kind of housing they wanted were doing better than the
clients that got the housing that was thought to be clinically
appropriate. Helping people to reach their goals is, among other things,
therapeutic.

One of the reasons I believe I was able to escape the role of chronic
patient that had been predicted for me was that I was able to leave the
surveillance and control of the mental health system when I left the
state hospital. Today, that's called "falling through the cracks." While
I agree that it's important to help people avoid hunger and
homelessness, such help must not come at too high a price. Help that
comes with unwanted strings - "We'll give you housing if you take
medication," "We'll sign your SSI papers if you go to the day program"
-is help that is paid for in imprisoned spirits and stifled dreams. We
should not be surprised that some people won't sell their souls so
cheaply.

Let us celebrate the spirit of non-compliance that is the self
struggling to survivor. Let us celebrate the unbowed head, the heart
that still dreams, the voice that refuses to be silent. I wish I could
show you the picture that hangs on my office wall, which inspires me
every day, a drawing by Tanya Temkin, a wonderful artist and psychiatric
survivor activist. In a gloomy and barred room a group of women sit
slumped in defeat, dresses in rags, while on the opposite wall their
shadows, upright, with raised arms and wild hair and clenched fists,
dance the triumphant dance of the spirit that will not die.